Part I. International Autism Day.

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As I walked through the family room, a TV announcer said today is International Autism Day. This leaves only a so-so mark on me because every day is autism day for us. Our first and only child was born apparently healthy, but his language had not developed by his second birthday, he didn’t make eye contact or point to things he wanted, and there were lots of tantrums where we had no clue what he wanted, only that he wanted something we were not giving him or doing for him.

I remember the kindness of the two early childhood specialists who came to our home to observe Joseph at play when he was almost exactly 2.5 years old: They watched and watched, and then they turned to me and used terms that I knew carried a meaning I would hate but that I did not yet know.

Joseph, they said, had almost no apparent language skills, either in receiving information or in expressing himself. He made no eye contact they said, never brought a toy over for me or one of them to see, and did not show “symbolic play.”

They said he almost certainly would be eligible for special therapy from a government program, but he would need to be seen by their developmental pediatrician, a doctor with particular experience in disorders of childhood development.

In the period between their observation and our meeting to share the results, I visited a psychiatrist I had seen for several years for depression, someone I knew well by that point, and, since he had followed Joseph since my son was a positive pregnancy test, that he also felt he knew well.

I told him the buzzwords the two professionals had used and began to tell him I understood how people felt when I used medical terms without explanation — when suddenly I saw, really saw, his face. He was shocked. Finally, he slowly said in English what the two professionals had said in their terminology: They were telling me Joseph had autism.

Oh no, I said, he loves the dog. Eddy, for Teddy, was one of about six words in his vocabulary. Although he often walks around the room when I read to him, sometimes he sits with me. He has engineering skills with the baby Lego blocks.

We saw the developmental pediatrician, then a behavioral neurologist, then a psychiatrist, and Joseph had 7 or 8 diagnoses by the time he turned 3 years old: pervasive developmental delay (the then-medical term for autism), language delay, major mood disorder (later diagnosed as a severe variant of juvenile bipolar disorder), obsessive compulsive disorder.

At a meeting at his preschool when he was about 3.5 years old, the consultant said Joseph fit the criteria for 7 or 8 neuropsychiatric diagnoses and was within one or two points of meeting several more. At that point, I was still capable of having my mouth drop open. Then the consultant tried to be kind. He pointed out Joseph was under the care of perhaps the world’s finest child psychiatrist, a lovely man who had gravely told me Joseph was “extraordinarily ill” when he first met my toddler…. then the youngest child ever to make it on an urgent basis into the child psych unit at Massachusetts General Hospital.

The consultant told us gently not to think of whether Joseph had a single-digit or double-digit number of disorders, but rather to realize there had been some global abnormalities in brain development that had left my child with highways to nowhere, wiring that did not connect pathways within the brain as they should but sent messages into dead ends or to the wrong processing centers.

We pushed and pushed and pushed for the most aggressive educational and medical care we could get, knowing that the brain is most able to change when a child is young. We listened to the anti-drug educators tell us that Joseph’s medication would leave him a shadow of a person, that their behavioral interventions would do far more. When we tried to taper medication, he would be awake for days at a time or gauge his gums until there was blood all over his face or tantrum on the floor until he was so tired he could only sob.

We opted for the medications. No two children are the same, but in our case giving Joseph a highly structured home life with skilled at-home help after school, getting and keeping him in an academic classroom in a program geared toward autism, and selectively not listening to negative prognostications on his future has led us to today: We have one child, for it would have been impossible in terms of effort or money to give Joseph everything he needed and have the luxury of another child…

but we have a child who smiles much of the time, always says please and thank you, reads avidly, can send me e-mails from his residential school (he went at age 14 years when we couldn’t do enough for him at home) telling me what movies are premiering on DVD next week, and telling me that he loves us and misses us. Last night he called me to say he had walked one of the nature trails with his one-to-one staff person (he delights in a harem of young women, most of whom adore him), they had written up a playlist of songs for his new movie, Joseph and Tigress (Tigress is one of his favorite characters from “Kung Fu Panda”) and then listened and danced to them all.

 

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